Hi there,
I am sorry to hear you were denied at Shriner's --I have heard of a few kids with complex medical problems being turned away. Curious though, which Shriner's was that?
I would still suggest you get in contact with Janet Cerrone, the PA for spine surgery in Philadelphia. They see all sorts of very complex spine cases, so perhaps they can help your daughter. Janet is also an extremely nice person. Her e-mail is janetcerrone@comcast.net
Good luck,
Gayle, age 50
Oct 2010 fusion T8-sacrum w/ pelvic fixation
Feb 2012 lumbar revision for broken rods @ L2-3-4
Sept 2015 major lumbar A/P revision for broken rods @ L5-S1
mom of Leah, 15 y/o, Diagnosed '08 with 26* T JIS (age 6)
2010 VBS Dr Luhmann Shriners St Louis
2017 curves stable/skeletely mature
also mom of Torrey, 12 y/o son, 16* T, stable